Invisible Fences

It was one of those glorious Sunday afternoons.  The sun taking no time to make known its ability to enforce the dress code of the day, and I was right there along with the rest of the crowd with my hat, sun screen, and umbrella.

I was at a family gathering.  Didn’t matter that it was a baseball game.  Yes, I am one of those people who doesn’t really care for baseball.  I know, I know, it’s America’s favorite pastime.  Or, so I’ve heard all of my life.  Nevertheless, even though I am a born and bred American, it is not my favorite.  Honestly, it would never even appear on any things-to-do list of mine.

Yet, there I was with the gang watching baseball.  And, I wasn’t only sitting there passing time until it was over.  Nope.  I was yelling and whooping.  Yes, I had become a fan in a few short moments.  Mimicking the guy behind me, I called out such terms as, “Good eye.”  (Huh?  Good eye?)  What happened?  My grandson was playing.

Funny how one’s perspective can change with the slightest alteration in circumstances.  It happens all the time.  We just don’t notice until something unique comes along – such as my grandson being part of a baseball team.  Surely changed my perspective on baseball.  (I am even planning on traveling three hours each way just to watch him play in another game tomorrow.)

There is another area where my perspective has changed, also.  It is the number of invisible fences that the mobility-challenged face every day, every where.

For example, the playoff park where my grandson was playing, on that beautiful, summer day, was designed with thoughtful consideration of handicapped people.  The bleachers had sections carved out for wheelchairs; there was an additional restroom large enough for a wheelchair; plenty of handicap parking spaces; and expansive, concrete sidewalks.  All this fabulous planning and accommodation helped make my day more enjoyable.

However, challenges still needed to be faced.  Even though the bleacher stands sat on a concrete pad, the sidewalk ended 25 feet short of the stands.  In between?   A sea of rough, uneven gravel.  To make matters worse, on one side were the bleacher stands and on the other side were the restrooms, food stand, and parking lot.  Having the wheels of an electric wheelchair (550 pounds unoccupied) spin in gravel is akin to a car stuck in the snow.  I can’t even imagine how difficult it would be for someone using a walker.

The clincher (it’s a baseball term, right?) came at the end of the game when the team met for the coach’s pep talk (or whatever it is they say at the end of a game).  It is that time when praises are given and awards are handed out.  Only, the dugout was another sea of gravel away.

So, there we sat, my grandson’s paternal grandfather and I (his maternal grandmother), watching everyone else gather together as we were left behind another invisible fence.

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Do You See What I See?

 

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Faces?  Vases?

 

Initially, which did you see?  How long did it take until you could see both easily and clearly?

Our eyes see more than our brain interprets.  Visual cues all around us are being filtered out, and our awareness is limited to our experiences.

When you encounter a set of stairs leading to a building, what do you see?  How about a soap dispenser attached to the wall above a sink?  What about a store’s double-door entry with no handicap button?  The last question gave it away, right?

If you are ambulant, then you probably don’t give much thought when encountering the above situations.  Oh, you might have a conscious thought as you grab for the handrail, but you probably don’t even see anything worth noting.  For the wheelchair roamer, we see obstacles.  In fact, the situation may be so unsolvable (e.g., stairs and no ramp) that we have to change our plans and turn away.  And that it how it feels.  We are turned away from participating, turned away because we are powerless, turned away because of an oversight.

“(A) public meeting on accessible housing for the disabled in Toronto had to be canceled because the building that was hosting it was not accessible to the disabled.  ‘There was an oversight,’ one official conceded.”  (The Week, December 23/30, 2016, p 6)

 

 

 

The Invisible Woman

Rose Wolfe

I have the unique ability to be invisible.  For a while, I thought it was because I am shorter than most adults.

If that is true, I thought, how is it that children are not bulldozed down into the ground?  Maybe, I reasoned, that is why kids have such high voices; it is a survival mechanism to alert adults around them that they are “down here.”  Eventually, I came suspect that something else is going on – a societal preference.  Our mores define children as needing protection and consideration.  So, we notice them; we see them.  The same is not true for the disAbled; our societal position is muddied and conflicting.  As a society, we nod our heads with smug smiles agreeing that the disabled should be treated with respect.

As a wheelchair occupant, I can tell you that society does not often practice what it preaches.  I will admit that a small segment of people will notice me and make accommodations.  However, navigating the streets, stores, and social situations is a burdensome task.  All my plans and movements must – and I do mean must – include me being responsible for everyone in my vicinity because I do not exist.  Sounding alarms as I wheel with the foot traffic, I need to watch for cigarettes, purses, bags, and people who swerve in front of me.  Without as much as a blush to the cheek, they admit, “Oh, I didn’t see you.”

You might think this is as humiliating as it can get, but no.  Worse yet are the times that I am scorned for being invisible.

Recently, my husband and I spent the day in Chicago at Navy Pier.  I was sitting out of the major pedestrian traffic path, but still blocking a small walkway.  (I have to sit somewhere.)  With a quick step and an urgency of importance swirling about her, a woman came straight towards me.  She came to a screeching halt (I heard her brakes squeal) as my invisibility faded away.  With furrowed brow and lips, she waved her hand as if swatting an annoying insect (speaking is difficult with a frowning mouth) for me to move.  Realizing that I had become visible, I turned on my wheelchair.  (Let me give you some inside information, electric wheelchairs take about five seconds to charge up before they are operational.)  Well, the necessary five seconds was too long for her.  Miss I Can’t Wait Because I Have Important Things to Do, huffed and puffed (was she about to blow me away?), told me to move (without wanting to hear that I needed to wait for my wheelchair), stomped about (was she ready to stampede me?), and then turned sharply to her left, took three steps, and walked (or should I say charged?) past me.

With her went my moment of visibility, and I retreated once again to wait for the next moment.

 

You Can’t Do That Anymore


Sitting in my wheelchair, on the edge of a trampoline mat, the same thought kept running through my head.  I want to jump.  Nah.  Yeah.  I want to jump.

With one final I want to jump, my mind took off with exhilarating memories of bouncing on trampolines and flying through the air.  Two things I enjoyed as a kid: swimming and jumping.  When small, personal trampolines first hit the market, I was right there in line to buy one.  For years, I enjoyed bouncing – tiny, little flights of gravity-defying moments.

All those memories were buried away deep in the past.  Until recently, when I took my grandson to an indoor trampoline park.  If you ever have the opportunity, go.

The indoor place near me has four separate areas.  Each one designed for a different purpose: freestyle, a basketball room, a dodgeball section, and a foam pit area.  You can even bounce off the walls!

As I sat there watching my grandson bounce, jump, and fly into the air, I felt intoxicated.  My body craved to fly.  I wanted to bounce, to lift my feet off the floor.  I wanted to defy gravity once again.  For a serious moment, I contemplated it.  For a very long, serious moment.

Then reality seeped into the crevices of my gray matter.   Do I have the core strength to bounce?  How uneven is the supporting edge?  Would I be able to get to the mat and back?  What if I fall?  No, better not try.  Maybe?  No.

I live in a new world, the world known as You Can’t Do That Anymore – But You Can Remember.

Some people advise us to forget the past.  They say it is best to live in the moment.  “The past is too painful,” they preach.  While I agree that living Right Here, Right Now is a healthy lifestyle choice, the past should not be forgotten.  Memories of how things were before we became disabled don’t have to be pushed away.  Our previous experiences add a richness to our lives.  Not only are there valuable lessons to be learned, but there are pleasures to be relived.

To reminisce and, once more, taste the pleasure of precious moments are treasures to be discovered.  Just like the unsolicited recall of an uncomplicated time in my childhood, we can choose to remember with joy – not pain or regret.

I may not be able to jump, but I can fly once more.

View From My Wheelchair: Weighing Your Words

 

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Seeing an aquaintance, I smile.  We have both been busy and have not had the opportunity to hug.  I am glad to see her.  She looks great.

“I like your haircut,” I say.  “It looks cute on you.”

“You need to stop losing weight,” she replies and touches my cheek.  “You don’t want to lose too much weight.  Your face will get too thin.”

“Is that a compliment?  Because I feel great.”

“Well, just stop losing weight because you don’t want to lose more.”

For most of my life, I was thin.  In fact, when I was 16 years old, I went on a weight-gaining regime.  With the research available at the time, I tried a 3,000 calorie/day diet.  It was crazy – peanut butter sandwiches and strawberry sundaes prevailed.  The result: a rash from too many strawberries and no significant weight gain.

After the failed experiment in trying to gain weight, I resigned myself to being angular, lanky, and thin.  As I matured, my metabolism slowed down, and I filled out.  Eventually, in my middle years, my weight was within a healthy range.

Muscular dystrophy changed everything, and the pendulum swung in the opposite direction. Even with a 1,300 calorie/day diet and regular exercise, I gained more than 20 pounds in two years.  I knew that my disease was making mush out of my muscles.  So, I resigned myself to the weight gain while I still adhered to counting calories.

Noticing the toll on my energy and mobility with each pound gained, I struggled to lift myself and walk short distances.  A new cycle was formed: less mobility – weight gain – fewer calories burned – weight gain – less energy – weight gain.

Then, one day, I decided to seek the advice of my friend, Beth, who adheres to an anti-inflammatory, gluten-free diet.  My motivation had nothing to do with weight.  Even though I was already adhering to a healthier food approach, I was interested in the gluten-free aspects of her lifestyle.  Armed with experience and knowledge, she filled me with delicious bites of information.  Venturing into the world of glycemic indices, food additives, and alternatives to refined sugar, I discovered new food combinations that are beneficial and nutritional.  I am glad that I decided to ask her for help.  My friend has been instrumental in guiding me on my personal journey to a new lifestyle and has been my recipe guru.

Quite the opposite of my failed experiments with calorie counting, the switch in my approach to my food intake has had positive results.  I feel better.  Just recently, I painted for two hours.  May not sound like much to you, but I was down to painting for 30 minutes at a time.  Even though my energy is still low, I do not feel fatigued all day long.

Another gain from the change in my diet is that I have lost 23 pounds in seven months.  Along with the nutritional benefits to my body, I am convinced that my weight loss is contributing to my increased energy levels.

I am happy.  More energy, less weight to lift, and feeling productive have all given me a boost.  The quality of my life has improved.


The encounter, I described at the beginning, with my acquaintance is not an isolated event.  Startingly, people feel free to make negative comments on my weight loss.  What gives?  According to my doctor, I am within the ideal weight range for my age, height, and gender.  Nevertheless, rather than complimenting me on losing weight, some people feel the compulsion to complain about it.  Funny, they don’t tell me I have lost too much weight; they tell me I might lose too much.  How do they know?  Do they realize that what they say hurts me?

As a disAbled person, I am forced to live in a world of neurotypical patterns and ableist attitudes.  Every day is a struggle.  Speaking for everyone who is facing tribulations: We are wounded warriors.  Please restrain from offering unsolicited advice on what we need to do or do not need to do.  The old adage: if you can’t say something nice, don’t say anything at all should be your mantra when engaging with a disAbled person.  Positive words are welcome.  Negative words are damaging.  Be an encourager.

Kind words are like honey–sweet to the soul and healthy for the body.
Proverbs 16:24

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View From My Wheelchair: Some Summertime Fun


Everything we know, knew has been turned around. Chronic illness took our definitions and buried our sandcastles. Yearnings remain, unrealizable. 

The sand at my feet haunts me with memories: 

Me, as a child, playing at the beach; Me, with my child, playing at the lake.

My heart beckons me, and I respond, “Yes, yes, I will find new ways to have fun.”

So, now, I dig deep into my soul. Pouring out my pain. Fun can be, is redefined. Laughter bursts. I find joy in watching others play in the sand and water. 

View From My Wheelchair: Who Is That? Do I Look Sick?

Rose Wolfe eyes

Has it ever happened to you?  You are washing your hands and, without thinking, you look up and see some stranger in the mirror looking back at you?  In that split second, you are shocked.  “Who is that person,” you wonder?

I mean, I know it’s me.  Yet, it’s not Me. It’s not the Me I was. It’s not the Me I thought I would be. It’s not even the Me I think I am.

So, who is that person looking back at me?  What do people see when they look at her?  Who do they think she is?

Just the other week, someone said to me, “You know, you don’t look sick.”   Do they mean I don’t look like someone who needs a wheelchair and is, therefore, faking it somehow?  Or, do they mean I look better than someone should look when they are mobility challenged?  What does sick look like?

Does it even matter?

This is a strange concept to me.  I don’t look sick.  Hmmm.  Does that mean that I need to wear sweat clothes and gym shoes?  Does it mean I should not wear makeup?  If you saw someone wearing sweat clothes, would you say, “Oh, look, that person is sick.”?  How about if you saw someone without makeup on?  What conclusions would you draw?

And, if I were to dress in a different way, what would I be saying about myself?  What would I be saying to you?  Some people have no choice.  They have been burdened with a stroke or paralysis.  This does not mean they are sick.  They are disAbled, mobility challenged, and dependent on a caretaker.

My reflection has changed.  My disease is changing my face.  And, I don’t always immediately recognize that woman in the mirror.  Still, she doesn’t look sick.

I keep coming back to the same question: What does it mean to look sick?  I don’t have an answer.

What I do know is that I don’t look sick because I’m not – sick.

View From a Wheelchair: To the Man Who Yelled at Me

Watch Where You Are Going

Michigan Avenue. Ugh!

Maneuvering down the crowded sidewalk and dodging people, I call out, “To your left.”

Tourists and Chicagoans alike ignore my warning.  To them, I am just another obstacle in their quest. They continue to cut in front of me. Many don’t even notice me in my big, looming wheelchair.  Because my chair is controlled by a joystick, it has no brakes and rolls to a stop.  If someone were to cut in front of me too quickly or stop too suddenly, there is a high risk of me running into them.  I know that most people do not think about the mechanics of wheelchair driving.  Thus, I try to warn them to watch where they are going; that I am here.  I exist.

I know the dangers.  Seriously, someone could get hurt.  So, as I cruise along in my 355-pound, roll-over-your-foot, knock-you-over, sidewalk-legal, personal-mobility tank, I call out, “To your left.”

Suddenly, a 60-something-year-old man starts to veer to his left, cutting close to my right side. Fearing that I will run into him any second, I call out louder, “Be careful. I’m right here to your left.”

By this time, we are in the middle of the street, and he turns sharply to look at me. “Watch out yourself,” he growls and continues his collision path.

Now, he is dangerously close to being hit.  To ward off an accident, I swerve to my left, narrowingly avoiding a car that had crossed the white line before stopping for the red light.  As I do so, I say, “I have no brakes. It would be terrible if I were to hit you.”

He quickens his pace and yells over his shoulder, “That’s your problem. You need to watch where you’re going!”


 

Just like the crowd on Michigan Avenue, we see others as obstacles to our quest. We look neither to the left, nor the right. Caught up in the day-to-day routines and demands, we put our heads down and forge ahead.

Of course, sir, you are right.  I do need to watch where I am going. In fact, we all do.

 

 

Essential Attributes of a Caretaker

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Caretaker or Care Taker?

One common, compound word: caretaker.  By definition, it means someone who maintains something (a building, an estate, a person).  Albeit maintaining is crucial to the welfare of the building, estate or person, maintaining does not automatically include improving, enhancing, or giving care.  Over the years, I have learned that someone can be a caretaker without being someone who takes care, a caretaker.

The relationship dynamics between caretaker and the disabled person have been examined in books and movies over the years.  Usually, in order to sharpen and create tension, the writer will develop stereotypical characters.  Two examples are: (1) an over-the-top thriller movie, “What Ever Happened to Baby Jane,” which highlights the wheelchair-bound individual’s dependency on another.  In the case of this movie, an unstable caretaker; and (2) a more realistic example is “You’re Not You,” which illustrates how a caretaker can augment the life of another.  Even though both movies are stereotypical, I recommend both for they clearly demonstrate the powerful role that a caretaker plays in the life of a disabled person.

When I first had the opportunity to bring a professional caretaker into my home, it was an unsettling process.  In addition to having a stranger in my home with access to everything, they were independent people who made decisions for me without consulting me.  Where I live, many of the agencies that provide home health care carefully screen potential caretakers for criminal backgrounds, but they do not screen them for the attributes that make a good caretaker.  The soft side of the individual is ignored (caretaker and client).  Consequently, I have had to contend with all sorts of people, from the angry to the apathetic. My current agency not only carefully screens the background of their applicants, but they spend time training them to care.  Through my personal experiences, I have learned that it takes a special person to be a

Through my personal experiences, I have learned that it takes a special person to be a caretaker.  Below, I discuss what I would consider are seven essential attributes.

Sacrificial

Above everything, an excellent caretaker is someone who puts the needs of the disabled person first.  When  I was 30 years old, my husband was diagnosed with cancer.  As his health declined, my role as wife and mother diminished as my role as caretaker intensified.  At first, he only needed me to drive him to his appointments.  In the later stages, he was bedridden.  Nothing mattered more than his comfort and needs.  My world was his world.  As the physical demands became greater, so did his need for emotional support.  Although I wanted to take time for me, I knew that my sacrifice paled in comparison to his suffering.

My role as caretaker was shortlived.  Some caretakers have no end in sight.  Their role seems endless and their needs have to be met.  If the caretaker is a professional, they can get their rest and relaxation at the end of their shift.  However, if the caretaker is a family member that lives with the disabled individual, then they have to learn how to take time for themselves.  A bedraggled caretaker cannot provide the needed care.  Boundaries need to be articulated and established.  Making time for rest and relaxation is crucial for a healthy relationship.

That being said, sacrifice is necessary.  The caretaker has a role: to take care of someone.  Remember, the one who is receiving the care would love to be able to do things for themselves.  There is nothing more discouraging than to feel as if you are a burden.  The emotional status of the chronically ill is delicate and to feel as if you are a burden is equivalent to feeling unloved and unwanted.

Compassion

We all thrive in a positive environment.  Treating the disabled with kindness, respect, and empathy goes a long way in making their life more tolerable.  The disabled have frustration (and some have anger) at the way their lives have evolved.  Consequently, more than ever, a tender hand and a kind heart are imperative.

Recently, while at the hair salon, I watched a caretaker assist a frail, elderly lady transfer from her wheelchair to a hair washing sink.  The caretaker failed to stand close enough to the lady, did not use appropriate techniques to assist the lady in standing, and almost dropped her in the process.  Observing the caretaker’s face, I could see the look of someone who was not engaged.  She rolled her eyes and frowned the whole time.  The lack of compassion was evident.

Reliable

In every career, reliability is a basic standard of performance.  When one person is dependent on another, reliability is paramount.  Last year, I had a caretaker who would fail to show up for work.  She just took random days off.  This left me with no food and no one in my house with me.  The agency would then have to scramble to find someone to fill in.  Many times, it would be 1 p.m. before someone came to give me breakfast.  My caretaker could not (or would not) understand that a late night partying was not substantially good behavior (or reason to call off) for a caregiver.  Even though I liked her, she knew that failing to show up for work would leave me without food and care.  This woman did not have an essential attribute for her position.

Adaptable

Often times, we have our own ways of doing things.  I happen to like clean kitchen counters, my clothes organized in my closet, and my food prepared a certain way.  Even though it might appear to be arbitrary decisions, I have reasons.  Clean kitchen counters translate into less likelihood of food contamination; an organized closet makes it easier for me to pick out clothes; and, I am committed to eating healthier food.

Doing the above tasks the way I prefer them to be completed makes my life easier.  Both my husband and my professional caretaker have adjusted their styles to assist me.  They are conscious of how their flexibility helps make my life more enjoyable.  In fact, when they help me get dressed, I can tell them exactly where to look for a particular item of clothing (for example).  This attribute of adaptability is pivotal as they adjust their behavior and become an extension of me.  Through them, I can accomplish some fundamental tasks.

Agreeable

You might think that agreeable could be included in the above category, “Adaptable.”  However, there is a distinction would mentioning.  While someone might adapt their behavior to another’s way of doing things, performing it with a smile makes the whole process less stressful.  I am sure that you have experienced times when someone has been patient with you.  It is a gift.  The relationship is deepened and strengthened just by having an agreeable companion.  The journey’s burden is lightened.

Confidential

Knowing that you are in control of your information and your life helps to maintain a sense of well-being.  From the unimportant minutiae (how I like my clothes folded) to the important details (what medicines I am taking), they all a part of me.  They are my being, my personhood.  When someone violates confidentiality, they are violating boundaries.  Two years ago, I heard the news about a disabled woman’s murder.  It turned out that the woman had a caretaker.  The caretaker had a boyfriend.  The boyfriend was told about the medical condition, habits, and items in the home.  The result:  the boyfriend broke into the disabled woman’s home, killed her, and robbed the home of money and items.

Teachable

Being open to learning a new or different way of performing tasks is a valuable asset for life in general.  When it comes to being an extension of another person, being teachable is essential for the caretaker.  Learning how to assist the disabled person gives the disabled a sense of accomplishment.

One recent caretaker made fabulous meals for me.  When she first started, she had some knowledge about healthier food choices.  Over the year, she learned about scallions, shallots, white onions vs. Vidalia onions, portobello and chanterelle mushrooms, spices, seasonings, salmon, tuna, grapeseed oil, parmesan and asiago cheese, serrano peppers, quinoa, brown rice, and how to make homemade chai nuts, granola, guacamole, pico de gallo, and mango salsa.  Actually, the list could be longer.  My point is that learning how to be the arms of another, while letting the disabled still have whatever control remains, is life affirming to the individual receiving care.

Faith

When facing difficult situations, any individual with a strong belief usually finds a way to persevere.  For a caretaker, their faith gives them the added benefit of a sense of purpose.  I have known caretakers whose only motivation was to get a paycheck at the end of the week.  While this is an undeniable motivator for most people, it can leave the caretaker feeling uninspired.  Over the past four years, I have worked with caretakers who did not believe in anything.  The odd discovery of working with them was that most were often angry and erratic.  However, the caretakers with faith believed that they were serving an important role.  And, I can tell you, they do serve an important role!

One Final Word

Caretakers who are caretakers are caregivers.  They promote and support the intangible needs of the disabled.  Speaking for the disabled, “Thank you.”

 

 

 

 

 

 

 

 

 

 

 

View from a Wheelchair: Easter

Easter

Although you would not know it from all the fanfare given to Christmas, Easter is the most meaningful holiday for the Christian.  It is the day that Old Testament prophecy was fulfilled and a New Covenant was established.  For believers, it signifies atonement and rebirth.

Sitting here, in this wheelchair, as I think about the coming high holiday and the promise of rebirth, I am struck by the weight of the entire story:  God and man; birth and rebirth.  Even if you do not believe, does the idea of having the opportunity to begin anew entice you?

When I was young, all I wanted was to get along with people and to have a good time.  With the birth of my daughter, I matured instantly.  As I looked at her innocent face and delicate body, I was infused with a strong desire to do everything I could to protect her and give her a good life.  I failed miserably, but I loved her.  I still do, love her.

Knowing how much I love my daughter gives me an inkling of how much God loves me.  To live with love is a gift.  To give love is an honor.  Even though I have many shortcomings, I am continually being renewed.  My temperance is strengthened and I find hope in every day.

Now, rather than just wanting to have a good time and to get along with people, I have a purpose.   The wheelchair does not limit me.  Rather, it gives me freedom to consider others, to notice them, and to reach out to them.  I am different.  I am a new creature.

Many people think of Christians as judgmental or even hateful.  I am distressed by this common portrayal of Christians for it includes me.  Here is an insight into what God requires of me:  “To do what is right to other people, to love being kind to others, and to live humbly, obeying my God.”  (Micah 6:8)

So, Easter is a time of celebration.  I am mindful of God’s New Covenant and of His love for all people.  Also, it is a time to gather together and celebrate love and relationships.  We were created to have partnerships.  Even though I am mobility challenged, I will spend the day with my daughter and extended family.  Everything has been planned and arranged to accommodate me and my wheelchair.  We will start the day with attendance at a church service and end the day with extended family time.

There is no greater gift than love.